Family

Therapy, School, Feelings

We had our annual ARD for Joseph and John to discuss their school and therapy needs. Joseph’s therapy needs We will be continuing speech therapy at school one time a week. We will continue working on the letters S/SH, J, & K. I feel there is another letter, but honestly, I am drawing a blank … Read moreTherapy, School, Feelings

Doctors and more

We had some appointments over the past few days with different doctors. Here is a summary of our visits. Over the past few years, I have connected with other parents whose children have Catel-Manzke syndrome. Some of the questions were based on issues with their children. There is a soon to be 24yr old, 14yr … Read moreDoctors and more

Catel-Manzke Syndrome: Our Journey

The road to adding John to our family was a long and difficult one. Thomas and I actually just decided to start trying right before Joseph turned 2 yrs old. Right as we decided is when we learned we were having our first of several miscarriages. We finally learned we would be welcoming a healthy child … Read moreCatel-Manzke Syndrome: Our Journey

Hurricane Harvey

Some of you may know, I have recently started helping admin a group that is globally known. It is Mom of Trach Babies. This is a support group for parents of trached children. I have been apart of this group for quite some time. However, recently I became apart of the admin team. Since I … Read moreHurricane Harvey

New Toys and a Project Update

John had his appointment with his pulmonologist, Dr, Chavez, last Wednesday in Temple. We addressed his reoccurring apnea events. Also the increase of oxygen he needs, especially while he is sick. Dr. Chavez says we will be putting him on a vent at night while he is asleep. If he is sick then it will be … Read moreNew Toys and a Project Update

May 25th – Backwards

Remember those 140 grams he gained over the past few days? Well, he’s lost them at today’s weigh in. This is a big reason why I don’t like to get too excited. Cautiously optimistic, but rarely overly excited. He’s back to 8.4lbs which is what he weighed on 5/22 I wouldn’t read into thinking we’re depressed, … Read moreMay 25th – Backwards